Communication Complications

Like most people with Rett syndrome, Abby does not speak or sign.  Understanding her thoughts can be challenging.  In our family, we have learned to read her expressions and signals pretty well, but I spend quite a bit of time teaching others how to communicate with Abby.  

First and foremost, I like to challenge the common assumption that a nonverbal person is cognitively delayed or has other problems with understanding.  Abby's hearing is fine, I know she is intelligent, and as far as I know, she understands everything.  I remind people of that often.  Misunderstanding Abby's receptive abilities can affect the way people interact with her.

Next, I ask people to think about all the things they would want to say if they had to keep their mouths closed and sit on their hands all day.  Without those two abilities, you need to get really creative.  Abby communicates her needs and questions and emotions mostly through facial expressions and eye gaze.

There is a lot of great augmentative communication technology out there - and some of it has proven useful to Abby - but most of it requires some kind of consistent hand function.  Abby does not have the fine motor control to touch small buttons or even to point to things with any accuracy.

Abby is an expert at making choices through eye gaze.  

You can hold two or more things or pictures or words in front of her and she will look at the one she wants.  She is learning to read and write this way.  She has a pen pal.  She is showing the teachers what we already knew.  She is smart and she is very motivated to communicate.  We just need to be ready to listen.  Although I always felt sure that Abby was full of regular thoughts just waiting to be expressed, I'm especially grateful to Dr. Karen Erickson, whose enthusiasm about the learning abilities of nonverbal children has inspired me.

With all we've learned about successfully communicating with Abby, there are still times when there is no substitute for the spoken language (or sign language).  When Abby is sad or sick, we can rarely pinpoint the problem.  She can't make choices until she's finished crying, and even then, it's not enough.  She may be able to tell us her head hurts, but think about all the types of pain you can have in your head. 

A week or two ago, Abby stopped walking.   We spent hours in the hospital and put her through countless tests, but the tests all came back normal.  I was told not to worry, to monitor her.  For over a week, we were put through the ropes of what many Rett families experience every day.  Suddenly, Abby needed to be carried from place to place.  Although she has a stroller, that didn't help her to get on the little yellow school bus or to get in and out of the regular bath tub.  My back became sore and my eyes were opened to the world of non-walkers.  In the back of all our minds was the question, "Will she walk again?"

She is walking again now and we still don't know what went wrong.  She is growing really fast these days and it's possible she pulled a muscle or ligament.  That's diagnosed by asking and answering questions.  Like most people with Rett syndrome, even Abby's expression of pain is unusual, so when the doctors manipulated all her joints and she smiled, we still weren't sure she was fine.

I often say, about parenting, it would all be manageable if your kids didn't get sick.  The same might be said for parenting someone like Abby.  You can get used to a lot of things, but when something's wrong with your child, and she can't tell you what it is, you feel completely helpless.  

I'm thankful my girl is walking again and smiling about it.  And I think of all the Rett families who deal with medical complications every day.  And I think of all the people who want to tell us what they are thinking and are just waiting for someone to understand.

Support

This week, I completed the application form for another year of funding for Special Services at Home.  The funding pays for the dedicated caregivers who come to spend time with Abby.  Like so much of the paperwork, the application must be completed each year to show continued need.  There are problems with the system.  Every year, hundreds of families are told that they qualify, but there is no funding left.  They are on a waiting lists.  There are all kinds of waiting lists for funding.  The waiting lists for adult services are even larger - more people and longer waits.

Abby has yet to qualify for the maximum yearly allowance of funding.  Each year I request the maximum funding, I must state my case on the application form, knowing full well that the best I can hope for is to get her on some waiting list.  I have learned how the system works best.  I put aside my motherly pride and I concentrate on every single bit of weakness and need she has.  I paint the most devastating picture possible.  It's not hard to do when you're dealing with Rett syndrome, but it leaves me wallowing in self pity when I'm finished two hours later.  One of these years, I will follow my urge to write a simple sentence across the front of the form: "I beseech you to come and spend 24 hours caring for my child."

So, I sent the envelope off this week - still kicking myself that I forgot to explain how long it takes to feed Abby breakfast each morning - and I'm working my way back to a more positive, or at least balanced perspective of our lives with Abby.  She is still having good days and bad days, but when she's happy, we're all happy.  We are still tweaking the meds to see what works best for Abby.  Abby missed the Hallowe'en festivities because she was having a bad day and needed a drug-induced sleep.  But she doesn't define her happiness by our cultural expectations at all.  She woke up happy to be able to spend time with her family and listen to some good music.  There's always something to learn from her.

Last year, I wrote an article about the importance of respite care for the long-term health of families like ours.  It's important for decision-makers to understand the value of that funding.  We are grateful for what we have and even for the waiting lists.  There are people in the world who could only dream of this much support.